Hidden Voices: An exploratory study of young carers in Cork

Hidden Voices:an exploratory study of young carers in CorkDr Cathal O’ConnellDr Joe FinnertyOrla EganCombat Poverty AgencyWorking Paper Series 08/07ISBN: 978-1-905-48566-6October 2008

AbstractInformal provision of care by family members is one of the foundations ofcare provision in Ireland. The unstated assumption amongst policy makersand service providers is that this care is provided by adults. This howeveroverlooks hidden young carers - young people under the age of eighteenyears who carry out extensive, ongoing and often onerous caringresponsibilities for family members. These hidden young carers and theirexperiences during and after caring are the focus of this research.Using a small sample of current and former young carers from Cork city andcounty, the study identifies the nature of the caring responsibilities they haveundertaken and the significant and often adverse impact this has on variousaspects of their lives. Service providers consulted in the second phase ofthe research reported a low level of knowledge or understanding of hiddenyoung carers. This highlights the importance of greater recognition at thelevel of policy formulation, and appropriately structured responses to theirneeds at the level of service provision.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 20081

Table of ContentsAbstract.........................................................................................................1Table of Contents..........................................................................................2List of Tables.................................................................................................41 Introduction ................................................................................................51.1 Research Officer, Research Advisory Group and Dissemination ofInterview Findings......................................................................................61.2 Report Outline.................................................................................72 Research and Policy on Young Carers in Ireland ..................................82.1 Existing Research on Young Carers in Ireland ...............................82.2 Prevalence of Young Carers in Ireland ...........................................82.3 Defining Young Carers....................................................................92.3.1 Identifying Young Carers .......................................................112.4 Young Carers: Theoretical Approaches ........................................122.5 An Overview of Different Perspectives ..............................................132.5.1 The Medical Model......................................................................132.5.2 The Young Carers Perspective ...................................................142.5.3 The Social Model of Disability .....................................................152.5.4 The Family Perspective...............................................................162.5.5 Alternative Views on Young Carers.............................................162.6 Policy and Provision in Ireland...........................................................173 Interviews with Hidden Young Carers in Cork......................................223.1 Research Design and Methodology...................................................223.2 Participant Profile...............................................................................233.2.1 Age and Gender..........................................................................243.2.2 Geographical Distribution............................................................243.2.3 Person Cared for and Reason for Caring....................................253.2.4 Length of Time Caring.................................................................263.2.5 Family Circumstances.................................................................273.3 Nature and Extent of Caring Responsibilities ....................................273.4 Feelings about Caring Responsibilities..............................................283.5 Impact of Caring on Young Carers ....................................................303.5.1 Education ....................................................................................313.5.2 Work/Career................................................................................363.5.3 Social Life/ Relationships ............................................................383.5.4 Health (Mental and Physical) ......................................................403.5.5 Poverty........................................................................................423.6 Information, Professional Intervention and Supports ....................443.7 Contact with Other Young Carers......................................................463.8 Conclusion.........................................................................................474 Conclusions and Recommendations....................................................494.1 Implications for Lives and Wellbeing of Young Carers.......................494.2 Risk of Poverty and Social Exclusion.................................................494.3 Absence of Professional Supports.....................................................494.4 Awareness of Health, Social Care and Education Providers .............504.5 Policy Responses ..............................................................................504.6 Institutional Framework......................................................................514.7 Further Research at National Level ...................................................51Bibliography ................................................................................................53Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 20082

Appendix 1: Survey audit of relevant organisations whose brief may includeproviding services to young persons who have assumed caringresponsibilities.............................................................................................57Appendix 2: Seminar on Young Carers.......................................................69Appendix 3: Interview Schedule for Young Carers......................................73Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 20083

List of TablesTable 3.1: Interview participants by age and gender 23Table 3.2: Geographical distribution of participants 23Table 3.3: Person cared for and reason for care 24Table 3.4: Age beginning caring/ duration and frequency of 25caringTable A1.1: Awareness of existence and circumstance of young 58carersTable A1.2: Mention of young carers in the organisation’s 59policies and documentsTable A1.3: Existence of services specifically targeted at young 60carersTable A1.4: Inclusion of young carers in any services currently 61provided for carersTable A1.5: Plans to develop policies, initiatives or services for 62young carersTable A1.6: Whether any current policies or initiatives could be 63adapted to meet the needs of young carersTable A1.7: Initial response to young carer interview findings 64Table A2.1 Profile of Seminar Participants 67Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 20084

1 IntroductionInformal provision of care by family members of elderly, ill and disabledpersons is one of the foundations of care provision in Ireland. It is ingrainedin the fabric of Irish society that caring for those who require it is a duty andan obligation and this is undertaken in a largely unquestioned and frequentlyunnoticed manner. Despite the development of welfare and social policies inIreland in recent decades the tradition of reliance on informal care remainsstrong and in many respects official policies on the personal social servicesare predicated in this continuing. Informal care is a valuable social policyresource which is increasingly acknowledged at official level as a centralplank of welfare provision through, for instance, an increased range ofsupports and funding for carers and support for organisations whose brief isto promote awareness of and lobby on behalf of carers.The primary assumption underpinning much of this informal care is that it isprovided by adult carers, and this undoubtedly is the case for the vastmajority of care provided. It is a testament to the strong bonds of loyalty andobligation between and within households and across the generations.There are, however, other actors who provide informal care who are rarelymentioned in discussions on informal care and are scarcely acknowledgedas existing. These are ‘hidden young carers’, in other words young peopleunder the age of eighteen years who carry out extensive, ongoing and oftenonerous caring responsibilities for family members who have no one else tolook after them.These hidden young carers and their experiences during and after caringare the focus of this research. Using a small sample of current and formeryoung carers from Cork city and county, the study attempts to identify thenature of the caring responsibilities they have undertaken and the impactthis has on various aspects of their lives, both in the short term and in thelonger term throughout their later (adult) lives.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 20085

In essence the research seeks to give a voice to young carers who arerarely heard and largely hidden, in terms of recognition of the caring rolesthey fulfil, in terms of the impact on their lives, and in terms of policies forcarers more generally.The research effectively follows up on a recommendation arising from themost comprehensive review of policy and perspectives on young carers inIreland undertaken by Halpenny and Gilligan in 2004. This stated that:priority research issues for further exploration in the area of youngcarers include gaining insight to the lived experience of young carers,into the nature of the caring tasks they undertake, and into themeaning and impact of caring roles on their lives (Halpenny andGilligan, 2004:47).1.1 Research Officer, Research Advisory Group and Dissemination ofInterview FindingsA research officer, Ms Orla Egan, was employed to undertake the interviewswith young carers.The research process was guided by an advisory group comprised ofrepresentatives of the Carers Association, the Department of Social andFamily Affairs, Cork City Partnership, Cork Rapid Programme, and theOffice for Social Inclusion of Cork City Council. Following on from theinterviews with current and former young carers, two additional elementswere included in the research process.Firstly, an audit of organisations and service providers involved in providingservices and supports to carers in the Cork area was undertaken. Amongthe aims was to assess the extent of recognition of the roles fulfilled byyoung carers, the impacts on their lives, and the needs that caringresponsibilities generated for them. These organisations were alsoCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 20086

circulated with the findings of the interviews for consideration in the contextof their own remit and service provision.Secondly, a day-long seminar was held to disseminate and discuss thefindings of the research. This seminar provided a valuable forum to heightenawareness with voluntary and statutory bodies and to promote thinkingabout joined-up strategies through which the needs of young carers couldbe responded to in practical terms.1.2 Report OutlineChapter two provides an overview of research and policy in relation to youngcarers in Ireland. Chapter three presents the methods and findings of theprimary research into the experiences and attitudes of current and formeryoung carers in Cork city and county. Fieldwork was conducted by Ms OrlaEgan. Chapter four presents the research conclusions andrecommendations. Summary accounts of the audit of services and theseminar of service providers are provided in Appendices 1 and 2respectively.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 20087

2 Research and Policy on Young Carers in Ireland2.1 Existing Research on Young Carers in IrelandThere is little by way of a young carer research literature in Ireland. Theexisting research overwhelmingly focuses on adult caregivers (see e.g.O’Donovan et al., 1997; Garavan et al., 2001. As mentioned above,Halpenny and Gilligan (2004) have undertaken a wide-ranging literaturereview on young carers which surveyed the international literature and policycontext. However, their report did not undertake any primary research withhidden young carers.In Ireland two short studies related to young carers were carried out in themid-1990s. The first was by Multiple Sclerosis Ireland (1996) on MSsufferers and the second was a pilot study by Carers Association (Ireland)(1997) which aimed to obtain an overall picture of the contexts within whichyoung people were providing care including levels of dependency, caringactivities and levels of support available to young carers. However, the focusof these studies differed from the current one. The MS Ireland study wasfocused on care needs of MS sufferers and the source of the care theyreceived while the Carers Association research focused on the nature of thetasks and extent of caring undertaken by young people rather than exploringthe impacts on young carers and their attitudes and feelings in relation totheir caring responsibilities.As a result this current research represents the first in-depth qualitativestudy which specifically gives a voice to hidden young carers in Ireland.Furthermore, in an effort to assess the long-term effect of caring on later life,the responses of a number of former young carers who are now adults havebeen included. Such voices give a valuable additional insight into the oftenlife-long effects that disproportionate caring as a young person can lead to.2.2 Prevalence of Young Carers in IrelandThis study is of a qualitative nature and does not purport to undertake anempirical assessment of the number of young carers in Ireland. However,Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 20088

ough estimates can be made to gauge the extent of caring by young peoplein Ireland from the data provided by the Census. The Census of Ireland(Volume 10 Carers and Disability) 2002 and 2006 provides data on caringactivities within the population as a whole. However, this includes onlypersons from the age of 15 years upwards and therefore the caringcontributions of young people under the age of 15 are not enumerated.In an analysis of the Census 2002 returns on caring, Halpenny and Gilliganreported that a total of 148,754 people in Ireland provided regular, unpaid,personal help to a family member or friend with a long-term illness, problemor disability; 57,480 of these were males and 91,274 were females andrepresented 3.8 per cent and 5.8 per cent of all males and femalesnationally and 4.8 per cent of the total population aged over 15 years. In theperiod between the Census of 2002 and that of 2006 the proportion of thepopulation aged 15 years and over providing care grew marginally to160,917, though in proportional terms it remained static at 4.8 per cent ofthe population as a whole.With respect to persons in younger age groups who provide care, Census2002 data are only available for persons from the age of 15 years upwards.A total of 2,996 persons aged between 15 and 17 years were recorded asproviding unpaid personal care. Of these 819 were aged 15 years, 103 wereaged 16 and 1,140 were aged 17, which in total accounted for 2 per cent ofthe total caring population. It is not possible to make comparisons between2002 and 2006 as the latter census did not publish figures for persons inyounger age groups who provide care.2.3 Defining Young CarersHalpenny and Gilligan (2004) have asserted that, due to the complexity anddiversity surrounding the role of young carers, a satisfactory definition hasproved difficult. However, a range of factors can be cited which set youngcarers apart from both adult carers and other young children within familieswho do not take on a caring role. According to Halpenny and Gilligan,young carers are usually under the age of 18 and are providing careCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 20089

… in the context of living with chronically ill or disabled parents. Theresponsibilities of young carers include providing practical andpersonal care and emotional support to the cared-for person.Providing such care may undermine other aspects of their lives, as,for example, social and educational opportunities, career prospectsand health (Halpenny and Gilligan, 2004:13).A range of additional criteria are also relevant to the definition of youngcarers such as the amount of caring and whether caring is primary orsecondary. Furthermore, Halpenny and Gilligan, citing Banks et al. (2002),note that the question of whether or not young people include themselves ascarers is important in any definition.Several definitions of young carers can be identified within the literature onsocial work and from caring organisations. The Blackwell Encyclopaedia ofSocial Work defines young carers as:Children and young persons under 18 who provide or intend toprovide care, assistance or support to another family member. Theycarry out, often on a regular basis, significant or substantial caringtasks and assume a level of responsibility which would usually beassociated with an adult. The person receiving care is often a parentbut can be a sibling, grandparent or other relative who is disabled,has some chronic illness, mental health problem or other conditionconnected with a need for care, support or supervision (cited inHalpenny and Gilligan, 2004:14).The Carers Association in the UK has proposed a definition of young carersas being persons who are under the age of 18 whose ‘life is in some wayrestricted because of the need to take responsibility for the care of a personwho is ill, has a disability, is experiencing mental distress, is affected bysubstance use’ (Carers National Association, 1997).Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200810

An alternative definition has been proposed by Thomas et al. (2003) whichthey assert is more inclusive than standard definitions of young carers as itreflects an acknowledgement of the needs of the young carers themselvesand distinguishes these from the needs of family members who are ill ordisabled. Accordingly, Thomas et al. identify the young carer as:A child or a young person who is in need of specific services becausetheir life is affected by the need to provide care for a family orhousehold member who has an illness or disability. This may includea child or young person who provides direct personal care to anotherperson, who takes on a supportive role for the main carer, or whoundertakes domestic duties as a result of the need for care. It mayalso include a child or a young person who is denied ordinary socialor educational opportunities because of the other person’s need forcare. These needs may arise on a regular or on an occasional basis(Thomas et al., cited in Halpenny and Gilligan, 2004:14).This definition would appear to be a more comprehensive and inclusive oneinsofar as it is founded on a recognition that the caring responsibilitiescarried out by young people create particular needs which must beresponded to. In the context of the research presented in this report it wouldseem to be the most suitable definition.2.3.1 Identifying Young CarersDifficulties in identifying and researching young carers arises partly out ofthe highly private nature of the role and the fear of both the young carer andthe adult they are caring for that either will be taken away from the familysetting. This is a particular issue when it comes to recognising young carers.There is fear on the part of the adult that the young carer will be taken away(Multiple Sclerosis Ireland, 2003; House of Commons Select Committee onChildren, Schools and Families, 2008). In addition, there is fear on the partof the young carer that the relative he/she cares for may be transferred tolong-term care or a hospital. If the person being cared for has mental healthproblems or a HIV/AIDS-related illness, there may be considerable stigmaCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200811

associated with caring for him/her (Gould, 1995; Watson, 1999, cited inHalpenny and Gilligan, 2004:13).A further issue in relation to service provision is that many professionalssuch as teachers who deal directly with children, or those such as GPs andmental health professionals who deal directly with those being cared for,may not be sufficiently aware, informed or resourced in addressing theyoung carers issue (Gillam et al., 2003; Barnardo’s, 2006; House ofCommons Select Committee on Children, Schools and Families, 2008).2.4 Young Carers: Theoretical ApproachesAccording to Becker et al. (1998), there are a number of key theoreticalparadigms which inform perspectives on young carers. These paradigmshave evolved over time, and according to Halpenny and Gilligan, changes inour conceptualisation and understanding of terms such as ‘disability’,‘caring’ and ‘childhood’ contribute to a shift in emphasis from a focusprimarily on outcomes and risks for children as carers to a broader focuswhich encompasses young carers as competent social agents (Halpennyand Gilligan, 2004:14).Becker et al. (1998), outline these key perspectives.• Firstly, there is the medical model, which originated in the early 1950sand is primarily concerned with the impact of ill-health and disability onfamilies, including children.• Secondly, there is the young carers perspective, which originated in thelate 1980s and early 1990s and is concerned specifically with childrenwho are care-givers within families where there is ill-health or physical ormental impairment. This approach is rooted in a children’s and carers’rights perspective which views children and carers as fulfilling distinctfamily and social roles, including being the main providers of care in thecommunity.• Thirdly, there is the social model of disability, which dates back to thelate 1970s. This approach is primarily concerned with the rights andCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200812

needs of disabled people and their experiences of ‘disabling barriers’including discrimination and exclusion.• Fourthly, there is the family perspective, which is still evolving andbecoming more clearly defined in service and policy responses to youngcarers. Becker et al. suggest that the family perspective has grown out ofthe debate between the rights of disabled people and the rights ofchildren who care and is consistent with the principle of UK and Irishpolicies, emphasising prevention in a family context as opposed toprotection (Becker et al., 1998).2.5 An Overview of Different Perspectives2.5.1 The Medical ModelIn the course of their discussion Becker et al. (1998) point out that themedical literature recognises the care given by children as secondary to theillness or disability itself, resulting in particular emphasis being placed on thepatient and only secondary attention being given to the impact on remainingfamily members. Their survey of the medically-informed literature on youngcarers revealed that the focus was on child maladjustment, behaviouralproblems and genetic and psychological risk factors, while according toOlgas, work relating to ‘specific sensory disabilities such as hearing andvisual impairment tended to focus on issues of communication and learningacquisition in children’ (Olgas, 1975 cited in Halpenny and Gilligan, 2004).Becker et al. have also identified within the medical literature the effects ofchanging role patterns in families where a member has a specific disabilityor chronic illness. In such circumstances children’s roles are modified whenthey take on additional caring responsibilities in the home. Other potentialeffects of children assuming caring roles are related to educationalachievement and transition to adulthood. Arnoud (1959) has suggested thatcaring can lead to ‘over-compliance’ and loss of emotional spontaneity inchildren. However, US research into former young carers found no evidenceof long-term mental health or emotional problems in this group (Kachorekand Shifren, 2003, cited in Social Care Institute for Excellence, 2005).Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200813

However, the potentially positive effects which can arise from care-givinghave also been noted. Sturges (1978) commented that in the short termcare-giving and providing assistance may have positive effects in that it canprovide security for the child and enable the child to feel that he/she isactively involved in contributing to positive outcomes for the cared-forperson (cited in Halpenny and Gilligan, 2004). Similarly, the work of Power(1977) is noted as suggesting the positive effects of caring in the context ofparental illness where caring could be viewed as a source of hope incontributing to the improvement of the parent’s functioning, though this wastempered by the concern that long-term positive effects can be outweighedby the resultant obstacles to social interaction which accompany such a role.Halpenny and Gilligan (2004) contend that maintaining a broad focus onperspectives regarding young carers is an important issue arising from theearly medically-informed studies of young carers. They note the emphasis ofBecker et al. in relation to the moderating effects of social factors on theexperiences and opportunities for children living with parental illness anddisability. They further note that the concern of much of the more recentwork following the medically-influenced literature is marked by an emphasison ‘support that is family-centred and reinforces arguments put forward insome of the core recent work on young carers’ (Halpenny and Gilligan,2004:15).2.5.2 The Young Carers PerspectiveThe young carers perspective, pioneered by the Young Carers ResearchGroup at Loughborough University since the early 1990s, asserts that theextent and nature of children’s caring roles is inextricably linked to theunderlying reasons for them assuming such roles in the first place.According to Halpenny and Gilligan, this approach is rooted in a children’sand carers’ rights perspective which views children and carers as fulfillingdistinct family and social roles, including being the main providers of care inthe community. Why children become carers is the outcome of a complexset of factors related to the illness or disability of the parent, the structure ofthe family, gender issues, and the extent and nature of external supports.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200814

Wider social policy measures also play a role as Aldridge and Becker(1997:4) have noted: ‘the causes of child caring are to be found in thecomplex interplay between medical and social determinants, not least thedisabling barriers engendered in much contemporary social welfare andsocial services policy, organisation and practice’ (cited in Halpenny andGiligan, 2004).2.5.3 The Social Model of DisabilityThis model views disability as an outcome of social structures andprocesses, and limitations and obstacles to opportunities and life chancesare viewed as arising out of such social processes (Oliver, 1996; Oliver andBarnes, 1998; Marks, 2001). On this basis an individual impairment isinterpreted in terms of the social and environmental factors that create thebarriers to participation in society by persons with a disability. In essence theproblem lies with the social barriers that prevent participation rather thanbeing inherent to the individual or the individual’s condition. The socialmodel contrasts with the medical or individualised model which equates theperson’s impairment with his/her disability and fails to contextualise it in thebroader social context.The social model of disability has important and critical implications forunderstanding the role of young carers. Becker et al. (1998) identify whatthey term a ‘sub-literature’ of the social model of disability – which haschallenged the work on young carers and has focused instead on the rightsand needs of those who have physical or mental impairments. Halpenny andGilligan (2004) note that a priority of the disability rights perspective hasbeen to question the validity of defining young carers as a ‘welfare category’.Labelling young people who care as such is viewed as undermining therights of disabled people (Keith and Morris, 1995; Parker and Olsen, 1995;Newman, 2002). A key response by the disability rights authors to the issueof young carers and how to support them has been that by recognising therights of disabled parents and fully meeting their needs throughcomprehensive support services, young caring would not exist, i.e. youngpeople would be freed from the burden of care.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200815

2.5.4 The Family PerspectiveThe family perspective on young carers highlights a shift in emphasis fromviewing them in isolation towards a consideration of the caring and supportneeds of the family as a whole. This arises from a recognition that illness ordisability can alter the organisation of the basic care-giving system withinfamilies (Altschuler, 1997, cited in Halpenny and Gilligan, 2004). Potentiallycontradictory systems of care-giving can exist side by side within the familybecause:… one of these is based on developmental needs and the other isbased on meeting the demands of the illness. For families wherechildren are involved in looking after parents, it is, therefore,important to ensure that one system of care does not negate thesecond. For example, providing care for a parent should not negatethe capacity of a mother or father to parent their child. Decisions onthe part of the ill or disabled parent about who to ask for help may bedetermined by whether requests are likely to be heard, rather thanwhat is age-appropriate. Although each family will find their ownmethod of coping with these challenges it is important to ensure thatchanges in family organisation do not obstruct access to constructiveparenting (Altschuler, 1997, cited in Halpenny and Gilligan, 2004:17).The family perspective would appear to offer a valuable framework for howthe needs of young carers and their families can be responded to in terms ofpolicy and services. The emphasis of the whole-family approach shifts thefocus of strategy for young carers from protection to prevention and fromyoung carers and those they are caring for as separate individuals towardsthe needs and rights of the family as a whole.2.5.5 Alternative Views on Young CarersA number of challenges have been proposed to the research on youngcarers. These can be summarised as follows: the exclusive focus onnegative outcomes for children who take on caring roles; the absence ofCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200816

ecognition of the resilience of children and young people in caring roles andthe potential for positive outcomes to emerge from their experiences; theeffective exclusion of a focus on the ill or disabled individual; and the lack ofrobust data exemplifying the impact of caring on children and young people.(See Cass 2008 for a discussion of these issues in an Australian setting.)Further criticisms relate to the absence of differentiation between thecontexts of caring and their consequences.Halpenny and Gilligan note that challenges to the research on young carersalso point out misconceptions about inadequate parenting skills of parentswith an illness or a disability. Such misconceptions are exacerbated by anabsence of emphasis on the social context in which caring is provided.These challenges, along with the evolving research from the perspectivesreferred to above, offer important guidance for evaluating and interpretingthe caring roles fulfilled by young carers. The diversity of perspectiveshighlights the need for broadly based and responsive frameworks to ensurethat research on young carers most effectively captures the livedexperiences of young carers and those they care for, highlights the impact ofcaring responsibilities on their quality of life and life chances, and raisesawareness of the deficits that need to be addressed at the level of policyand provision.2.6 Policy and Provision in IrelandIn the Irish context, recognition and responses to the existence and needs ofyoung carers could be best described as uneven. For example, no referenceto young carers is made in the major policy document relating to children inIreland – the National Children’s Strategy 2000–2010. This is a serious gapin official recognition and awareness of a highly vulnerable segment of thechild population. Many other policy and research reports in relation tochildren in Ireland also omit any reference to the existence and contributionof young carers. Specifically, the issue of young carers is not mentioned inthe Office for Social Inclusion (2007) publication A Social Portrait of Childrenin Ireland. Additionally, no national policy strategy exists with an explicitfocus on young carers. Traditionally it has been the needs of adult carersCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200817

that have been the focus of lobbying, research, policy statements andservice provision in this area. For example, there is a noteworthy absence ofmention of the ‘young carer’ issue in the Comhairle document SupportingCarers (2002) or in The Joint Oireachtas Report on the Position of Full-TimeCarers (2003b).It is certainly the case that the issue of informal care has enjoyed greaterpolitical and policy attention in recent years. The Carers Association wasone of the voluntary groups involved in negotiating the national partnershipagreement. The agreement, Towards 2016, the National Action Plan onSocial Inclusion and the Programme for Government, contain severalreferences to carers; with a focus on income supports for adult carers, andan emerging emphasis on training and consultation (see also Browne, 2005for a discussion of the evolution of income supports for adult family carers).However, it is evident that such documents understand the role of carer tobe performed by adults. For example, in those documents adopting thecurrent life-cycle approach to the welfare state (NESC, 2005), issuesrelating to carers are outlined in the section on ‘people of working age’rather than also in the section on ‘children’.Recent reports on caring by Cullen et al. (2004) and by Browne (2005)similarly make little or no mention of young carers. There is, however, apassing acknowledgement in the recently published carers consultationreport (Carer’s Association of Ireland, Carer Alliance Ireland and Caring forCarers Ireland, 2008:28) that ‘… carers comprise a very heterogeneousgroup … . Caring is carried out by all age groups throughout the life cycle,including children.’Evidence is now emerging of a growing awareness of the roles played byyoung carers and the subsequent needs of these young people. Recentpolicy documents arising from the social partnership process overtlyacknowledge the existence of young carers as a specific cohort within thecaring population overall, especially where they may be undertakingCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200818

‘inappropriate care roles’. Arising from the participation of the CarersAssociation in the negotiation of the current national partnership agreement,Towards 2016, there is a commitment to undertake research on ‘the extent,degree and impact’ of caring on the lives of the children concerned. It goeson to commit to the development of supports to ‘alleviate specific problemareas identified for children’, based on the findings of the research(Government of Ireland, 2006: 46).Some recognition of young carers is also evident in terms of thedevelopment and implementation of equality policies. In a report entitledImplementing Equality for Carers, the Equality Authority (2005) highlightsconcerns in respect of the rights of children who find themselves taking onexcessive or inappropriate caring responsibilities. The Equality Authoritynoted that the extent and nature of the responsibilities carried by youngcarers is largely unknown and that ‘it is highly undesirable for young peopleto have such a heavy burden of caring responsibilities’.In terms of protecting the rights of such children, the Equality Authorityasserts that ‘the state has a clear responsibility to provide a full range ofservices for young carers’. These services must begin by identifying theyoung carers and follow on by the provision of practical supports such ascounselling, respite, access to education, social inclusion and meetingpersonal development needs (Equality Authority, 2005). To progress therights agenda of young carers the Authority recommended that their needsbe addressed as a matter of urgency by such agencies as the HealthService Executive and Department of Education and Science.The UN Convention on the Rights of the Child provides a test of how wellIrish policy and provision performs in respect of the recognition and needs ofyoung carers. When measured against a number of the articles contained inthe Convention, significant deficits are revealed. For instance, it is arguablethat the current poor levels of acknowledgement and appropriate responsesfor young carers in Ireland means that the state does not adhere to theoverarching principles of Article 4 which asserts that ‘States Parties shallCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200819

undertake all appropriate legislative, administrative and other measures forthe implementation of the rights recognised in the present Convention’ (UN1989 Article 4: 44.25). Similarly, the absence of support services for youngcarers to enjoy their rights to rest, leisure, recreation, appropriate to theirage is in contravention of Article 31. Undertaking excessive caringresponsibilities without appropriate supports can also be interpreted asrunning counter to the right to education (Article 28) in relation to childrenbeing in a position to access and attend school.The sporadic nature of policy recognition in Ireland is also characteristic ofmany other countries, with the UK and Australia being notable exceptions..In the UK, for example, social services departments can assess youngcarers under Section 17 of the Children Act (1989) as children in need, or ascarers – at any age – under the 1995 Carers (Recognition and Services)Act. The Carers and Disabled Children Act (2000) offers an opportunity forcarers over the age of 16 to receive an assessment and services, includingdirect payments, in their own right (Dearden and Becker, 2004). The EveryChild Matters policy initiative supplies detailed guidelines for relevant serviceproviders in identifying and assessing young carers (Princess Royal Trust,2005). he recently launched (UK) national carers’ strategy (H.M.Government, 2008) also includes a section on young carers, mainly in thearea of education and awareness-raising among service providers.In Australia, the improved visibility of young carers emerged from theadvocacy work of NGOs in the area, leading to a number of researchstudies in the last 10 years (Cass, 2007). In particular, the CommonwealthDepartment of Family and Community Services funded the CarersAssociation to undertake national research on young carers. Mostinterventions targeted at young carers specifically are channed throughvoluntary organisations such as regional carers associations, comprisingyoung carers websites, information, support groups and respite (see e.g.Carers Association, 2008). However, by contrast with the UK, there is nolegal entitlement to assessment and services in Australia.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200820

This review has examined the literature relating to the definition of youngcarers, the various theoretical perspectives by which to analyse andinterpret their roles, their relationships with those they care for, andhighlighted aspects of the policy responses nationally and international.The review of theoretical perspectives offers a range of conceptualapproaches to interpreting, understanding and responding to the youngcarers phenomenon. It has shown how recent thinking on young carers hasbecome more broadly based in comparison to earlier ideas with a shiftevident from a concentration on the impacts on children who are contendingwith situations of ongoing illness or disability to exploring the wider contextswithin which they exist such as low income, poverty and socio-economicmarginalization, and social networks. The coping capacity of children whocare is highlighted by other strands of the literature – partly in response to aview that there may be positive outcomes for young carers arising from theirresponsibilities in terms of stronger relationships with those they care for,resilience, coping capacity and acquisition of vocational skills.The policy review noted the sporadic and uneven attention paid to youngcarers in the Irish context, which contrasts with the international experience.The policy gaps and subsequent deficits in services and supports for youngcarers in Ireland pose major challenges to policy makers and statutoryservices in ensuring that the basic rights of such young people arerespected and vindicated.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200821

3 Interviews with Hidden Young Carers in Cork3.1 Research Design and MethodologyIn attempting to identify potential participants, contact was made with a widerange of organisations and individuals who work with families and youngpeople in the wider Cork area and who could be in a position to identify andintroduce young carers. Contact was made by phone and/or by letter.Those contacted in relation to the research included:• Youth organisations• Educational establishments• School completion programmes• Community development programmes• Family centres• RAPID co-ordinators• Sporting clubs• Carers’ organisations• Disability groups.A number of network meetings were also attended to publicise the researchand to ask for assistance in identifying potential participants. This includedthe Knocknaheeny Network and a platform meeting of the DisabilityFederation of Ireland, Cork and Kerry Branch.Extensive efforts were made through the resources of the advisory groupand the HSE South to publicise the research, particularly amongst PublicHealth Nurses who are in direct contact with the families of people who areill or disabled.Unfortunately, however, most of those contacted failed to identify any youngcarers. This does not imply that young carers do not exist, but rather reflectsCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200822

the invisibility of young carers and the hidden nature of the issues beingresearched, as discussed in Chapter one. Many of those contacted wereunaware that young people undertake significant caring responsibilities.Others were aware of a number of young carers, but were reluctant to putthe researcher in contact with them for fear of exacerbating already difficultsituations.The research was conducted primarily through qualitative, semi-structuredinterviews with young carers and former young carers. The interviews werecarried out by an experienced social researcher, Ms Orla Egan who washighly cognisant both in arranging and conducting the interviews of thesensitive nature of the material involved. Interviews were undertaken atlocations chosen by the interviewees – where they felt comfortable - such asyouth centres, cafés etc. The interviews ranged in duration from fiftyminutes to two hours and the questions were posed in an informal mannercognisant of the age of interviewees. (see Appendix 3)The young carers and former young carers who participated in this researchwere identified through the following channels:• Youthreach Knocknaheeny• Youthreach Bandon• Carer’s Support Group, Cork• Multiple Sclerosis Society, CorkPersonal contact: These were persons who took up the invitation, as postedon noticeboards and email lists of the organisations listed above, to contactthe researchers directly.3.2 Participant ProfileTen interviews overall were carried out as part of this research from 2004onwards. This included nine interviews with young carers – comprising iveyoung carers and four former young carers. Two of the young carers aresiblings. One person who is being cared for by a young carer was alsointerviewed.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200823

The low number of interviews reflects the difficulties encountered in locatingand contacting young carers (as outlined above). However, it is clear thatthe interviews carried out have highlighted the major issues of concern toyoung carers and demonstrate the diverse impacts of caring on youngpeople’s lives.3.2.1 Age and GenderThe interview sample reflects a range of age groups, with an even balanceof male and female participants (Table 3.1). While no young carers undertwelve years of age were interviewed, a number of the participants had beencaring from as young as four or five years of age.AGE FEMALE MALE TOTAL12 – 13 1 1 214 – 15 0 2 216 – 17 0 0 018 – 19 1 0 120s 0 1 130s 1 0 140s 1 0 150s 1 0 1TOTAL 5 4 9Table 3.1: Interview participants by age and gender3.2.2 Geographical DistributionThe young carers and former young carers interviewed came from variousparts of Cork city and county (Table 3.2).AREABallyphehane 2Bandon 1Blarney 1Douglas 2NUMBERCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200824

Gurranabraher 2Togher 1Table 3.2: Geographical distribution of participants3.2.3 Person Cared for and Reason for CaringEight of the nine young carers and former young carers interviewed werecaring for their mother. The ninth interviewee took over caring for a youngersister when her mother suffered a nervous breakdown.Four of the young carers and former young carers were caring for more thanone person. In three of these cases, the carer also took responsibility for thecare of a younger sibling, as their mother was unable to do so. The fourthcarer was responsible for caring for three people: her mother, aunt andgrandfather.The young carers and former young carers were taking care of relatives witha mixture of physical disability and mental health problems. Seven of therelatives being cared for had some form of physical disability. Four sufferedfrom mental health problems. Three needed care because of their age(younger siblings).Person Reason Care NeededCared ForMother Mother had stroke causing mobility difficulties and partialparalysis.Sister Sister has Down’s Syndrome.Mother had nervous breakdown and was unable to care forher daughter.Mother Mother had mental illness.AuntAunt had Schizophrenia.Grandfather Grandfather was elderly (90s).Mother Mother has Multiple Sclerosis.Sister/ Mother has Manic Depression – unable to care for youngestMother daughter.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200825

MotherMotherMother andBrotherMother andBrotherMother has Multiple Sclerosis.Mother has Multiple Sclerosis.Mother physically disabled. Father alcoholic.Caring for younger brother.Mother had Recurrent Depressive Disorder.Caring for younger brother.Table 3.3: Person cared for and reason for care3.2.4 Length of Time CaringFour of the young carers and former young carers interviewed began caringwhen they were less than six years of age. A total of five young carers andformer young carers began caring under the age of ten. Four young carersand former young carers began caring in their teenage years.Of the current young carers, three began caring under the age of six, whilethe remaining two began caring at eleven or twelve years of age. Thus all ofthe current young carers began caring at age twelve or younger. All theyoung carers and former young carers interviewed had been caring for along period of time, from a minimum of around four years up to over fortyyears of caring.All the young carers and former young carers interviewed were – or hadbeen – caring on a daily basis, although there was variation in the natureand intensity of the caring.CurrentAgeAge BeganCaringNo. YearsCaringFrequencyof Care12 5 7 Daily13 6 7 Daily14 4 10 Daily15 ~ 11 ~ 4 Daily18 12 6 Daily25 18 7 Daily35 15 (until 20) 5 DailyCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200826

44 9 33 Daily50 Toddler ~ 45 DailyTable 3.4: Age beginning caring/ duration and frequency of caring3.2.5 Family CircumstancesFour of the young carers and former young carers lived in households wherethe parents had separated and the father was absent. Three of these livedwith siblings and their mother.The father was present in the home of five of the young carers and formeryoung carers interviewed. However, in four of these cases the father wasout at work, leaving the primary caring responsibilities to the young carer. Inthe other case, the father had given up work to assume prime caring of themother, thus relieving somewhat the caring responsibilities of the youngcarer.3.3 Nature and Extent of Caring ResponsibilitiesThe nature and extent of caring responsibilities varied among the youngcarers and former young carers interviewed.One former young carer was caring for three people – her mother, aunt andgrandfather – from when she was a toddler. Her mother and aunt bothsuffered from mental illness, while the grandfather was elderly andphysically ill. She cared for all of them daily and was also often up at nightwith them. Her father was present but was working, so she had primaryresponsibility for caring for them. A younger brother was also present but hewas not expected to do the caring work. The caring involved personal care(dressing, emptying commodes, etc.), housework and cooking as well as theneed to constantly watch her aunt who was inclined to wander the roads,and her mother who was paranoid and would keep hiding things in thehouse.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200827

Another former young carer took care of her sister, who has Down’ssyndrome, from when she was nine years old and her sister was a baby.Her mother suffered a nervous breakdown and was unable to care for her.Her father was working, an older sister had left the country and her brothersplayed no role in caring. Her father died when she was sixteen, leaving heras primary carer. Caring responsibilities included personal care, cooking,shopping and housework. She also took care of her mother who was selfneglecting.At a later stage she arranged and monitored education andrehabilitative care for her sister.Two young carers who are siblings provide a great deal of physical andpersonal care in addition to assisting with housework and cooking. Thisincludes helping their mother in and out of bed, in and out of the car, on toand off the toilet and assisting with dressing. The daughter, on occasion,has had to assist in changing her mother’s catheter.Another young carer takes care of her younger sister (six years old) andused to also care for a younger brother. This involved all the tasksassociated with caring for a young child as well as trying to make sure herbrother went to school. She also has to watch her mother, who is manicdepressive, and ensure that she has not fallen asleep smoking or left all thedoors unlocked.One young carer described his caring responsibilities as: ‘I just give an oldhand like.’ This entailed daily assistance with housework, shopping andgetting his mother’s medication. A key element was regular checking on hismother (every few hours) to see if she was okay or if she needed anythingand staying with her if she was unwell.3.4 Feelings about Caring ResponsibilitiesInterview participants expressed a range of emotions in relation to theircaring role: acceptance, resentment, anger, annoyance, stress, trauma andupset.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200828

Some felt that caring for their relative, while difficult, was just something youdo because of family bonds.‘It’s not all that bad like. ……. The odd time there you’d get fedup of it like. But what can I do, it’s my mam. You have to lookafter her. She does the same for me.’Some felt that you do it because you were used to it or because you don’tknow any different.‘It was difficult but you knew nothing different at that time.’‘I’d grown up with it. It was just kinda normal to me. I just didit.’Other young carers expressed a clear dislike and resentment of having toprovide care.All the young carers and former young carers interviewed found the situationstressful and traumatic, to a greater or lesser extent.You were constantly stressed to the limit. Terribly stressful; so Igrew up in a terribly stressful situation.’‘I get fed-up sometimes.’‘Very stressful; you just want to run away sometimes. …Everyone just wants to run away from it ’cos it’s horrible like.You just want to get away from it.’‘Looking back it was absolutely atrocious; I don’t know how wesurvived it. It was completely traumatic.’‘It’s kinda annoying.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200829

Many expressed anger and hurt at the situation they had been placed in andat the fact that no one intervened to change that situation.‘What hurts me most is the fact that all that went on and therewas no one took any notice.’‘When I came to sixteen, seventeen, eighteen, I felt very angry.Extremely angry [Her brothers and older sister took noresponsibility.] and for years I really and truly resented theirfreedom, their lack of responsibility, lack of consideration forboth of us.’‘By the time I was sixteen I was completely angry, I wascompletely frustrated.’Young carers were very upset by their situation or by seeing their relative,often their parent, feeling unwell.‘Seeing her there, not well at all; you wouldn’t be able to put upwith that every day, looking at her when she’s not well at all.’‘I felt awful.’Some young carers felt trapped by the situation of having to provide care:‘You were in a cage and you couldn’t get out.’3.5 Impact of Caring on Young CarersThis research has clearly demonstrated that being a young carer has asignificant, and usually negative, impact on the lives of the young peopleinvolved. The impacts of caring at a young age are multidimensional,affecting education, physical and mental health, social life, career and lifechances and choices.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200830

3.5.1 EducationBeing a young carer had a significant impact on the education of the youngcarers and former young carers interviewed.For one of the former young carers, who was caring from when she was atoddler, being a young carer resulted in her missing out almost completelyon education. Because of caring responsibilities the child was kept homefrom school from an early age, with significant implications for her educationand life chances.‘You’d have a couple of days at school, days off from school –you’d have to stay at home if there was no one to look afterthem. Now I loved school. I wanted to be educated. It affectedme all through life. Now I can’t apply for a job or anything likethat now ’cos I’m not educated enough.’She is very angry that no-one intervened to ensure she received aneducation. Doctors, nurses, TDs and the school were all aware of hersituation.‘And yet I went through the net, stopping at home from schooland caring at home. And nobody ever came to say this can’t goon, this child has got to go to school.’There is an element of gender discrimination in this case. Her brother waseducated but it was not considered as important that she be educatedbecause she was a girl.‘And being a daughter, it was kinda seen in those days that adaughter, sure why would you bother educating her, she’d onlybe getting married. In those days it was nothing thought of adaughter. A son had to be educated but not a daughter. So I wasthe one.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200831

Her lack of education impacted on her throughout her life, affecting inparticular her self-confidence and work opportunities.‘It has affected me now like if I’m applying for a job or talk up atmeetings or things like that, I’m afraid of saying the wrong thing.I know it’s all inside me what I want to say out but I’m afraid I’llsay the wrong words, my grammar would be very bad. And if Iwas asked then to write a few words, comments, I’d fall down onthat. That’s how it’s affected me all through my life. And there’dbe different jobs come up and I couldn’t take them.’Being a young carer also impacted significantly on the education of anotherformer young carer who was caring for her younger sister from when thesister was a baby and the young carer was nine years old. She would carefor her sister before she went to school in the morning, feeding, changingand bathing her. She would then come home from school during themorning break at eleven to feed and change her sister and would comehome again at lunch time, make the lunch and light the fire. Once schoolfinished for the day she would come straight home, care for her sister, dothe housework and make the dinner. This obviously impacted greatly on herability to concentrate at school and to do her homework:‘I mean there wasn’t time for schoolwork as such.’Her father died when she was sixteen and she left school half way throughher intermediate certificate year and went out to work. She returned toschool later to do her leaving certificate but didn’t do well as she had missedout on so much of her education at that stage. This then impacted on thekind of work she could do.‘I just worked in menial jobs all through the years.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200832

She had wanted to work with children with special needs but didn’t do wellenough in her leaving certificate to enter the training course. Her practicalexperience in providing care for her sister with special needs was not takeninto account.One of the other former young carers would have missed out on someschool because of caring responsibilities.‘Certainly I would have missed days here and there and certainlywould have, if we’d had a really bad time of it during the week Iwould have stayed out to care for my mother for sure.’However, the greatest impact for this young carer was on her schoolworkand ability to concentrate and study.‘I simply could not study at all.’She was doing well at school before her mother became ill and would havebeen in the honours class for most subjects. The stress of the homesituation impacted on her and on her education.‘I would have changed and that would have been noticeable inschool. I was quite angry the whole time. I didn’t feel I couldcope at all education-wise.’She began missing out on school. She did sit the leaving certificate butwasn’t able to concentrate and didn’t do very well in her exams. She didn’tfeel able, at that stage, to go on to further education and instead began towork in factories. She was in her mid-20s before she returned to education.‘I would say that because of what happened, because of the lackof supports, both informally and professionally, it completelyput my life on hold for at least a good seven to eight years.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200833

Caring responsibilities also impacted significantly on the educationalexperience of an eighteen-year-old carer who was caring for her mother andyounger siblings since she was twelve. She missed out on lots of school:she would miss a few days each week and would sometimes be out ofschool for a few months at a time.‘I lost out, that was the main reason I never finished my leavingcert was ’cos I was always at home minding my sister. … so Imissed out so much at school that I never got to finish it. Imissed out on lots of secondary school.’She has now returned to education and is attending Youthreach, which shereally enjoys.‘I love to come here in the morning. I’m the first up because itgets me out of the house for a few hours. … Hopefully I’ll getcollege or something out of it.’A fifteen-year-old carer had been missing out on a lot of school, partlybecause of the situation at home.‘I usen’t go to school at all. Because my mam was sick I thoughtI didn’t have to go to school. I didn’t bother going.’He started to get into trouble, stealing motor bikes. His mother became veryupset because he was missing school and getting into trouble. Given theirclose relationship, this affected him and he decided to go to Youthreach,where he is now studying for his junior certificate. He finds Youthreach to bea much more supportive environment than his previous school; they areunderstanding if he needs to come to school late because he is helping hismother:‘This place is grand.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200834

A fourteen-year-old carer avoided having to miss out on school because hisfather and older brothers took on a lot of the caring responsibilities at home.However, the stress of the situation at home, and in particular of trying tobalance school work and caring responsibilities impacted on him and hebegan to get very bad headaches.‘When I started secondary school I had nineteen subjects to doand come home and a load of homework and learning and thenhave to help Mum at the same time and you wouldn’t have timefor everything like and it was just annoying. And I supposethat’s what brought them on.’A twelve-year-old carer misses out on attending school sometimes, but isusually able to go to school. However, given his caring responsibilities whenhe comes home from school, he sometimes does not have enough time forhis homework in the evenings. He goes to school early and does some ofhis homework then.Similarly, a thirteen-year-old carer doesn’t miss out on school but does find itdifficult to find enough time for homework. It is particularly stressful comingup to exam time at Christmas and the summer.‘It’s hard trying to balance it all.’This young woman’s mother often needs help during the night time.‘I do the night time about three times a week. She keeps me upsometimes all night.’As a result she is tired going to school and this impacts on her ability toconcentrate on her schoolwork. She hasn’t explained her home situation toher teachers, who are therefore unaware of why she is tired in class.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200835

’Cos they teach me stuff, they’re your teachers – you don’tactually tell them what’s going on. They only teach you, they getpaid for teaching you but not to hear what’s going on.’Being a young carer adversely affected the education of the young carersand former young carers interviewed. This ranged from completely missingout on education, to difficulties balancing homework and caringresponsibilities. Most received little or no support from their schools andthere was little intervention to ensure that their education was not affected.Missing out on education has had implications for their life and careerchoices.It is positive to note, however, that two young carers’ experience ofeducation changed when they began to attend a Youthreach centre. Bothare now enthusiastic about their education and have plans to continue withfurther education and training. This demonstrates how a more supportiveand aware educational environment can mitigate the impact of caring onyoung carers’ education.3.5.2 Work/CareerIt was clear from discussions with former young carers that being a youngcarer impacted significantly on their work and career paths. For most ofthem this was directly linked to the fact that their caring responsibilities hadadversely affected their educational opportunities, as outlined above. Thislimited the range of employment opportunities open to them and manyended up in factory jobs or doing what one woman described as ‘menialwork’.For some the impact on employment prospects has been felt right throughtheir lives and continued to affect their confidence to apply for jobs.‘I’ve been offered different jobs since that are better paid but Ifeel I wouldn’t be educated enough for it. It hits me all the time.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200836

You’d be knocked down all the time. You’re being reminded allthe time of what you missed out on.’The former young carers feel that their career paths and life choices havebeen significantly affected by their caring responsibilities. As one woman putit:‘I would have probably taken different roads. There would havebeen different paths open to me.’Most of the former young carers have ended up working in the field ofcaring. One woman has spent her whole life providing care for familymembers and subsequently working as a carer in a convent.‘So the caring role is still there; it will never leave me; it’s there.’One woman wanted to train to work with people with special needs but,because she had missed out on so much of her education, didn’t have theright educational qualifications and her practical work experience in this areawasn’t taken into account. So she continued to work in factories untilrecently. She now works as a home help where her years of caringexperience are valued and she provides training for other home helps andworks with ‘high maintenance’ patients.Another woman went from school into factory work which she hated. Shewas in her twenties before she returned to education and trained as a socialworker. She now works as a social worker in the psychiatric services. Shefeels that her own experience as a young carer gives her a greater insightand understanding of the issues faced by her clients.‘I think it gives me a deeper empathy with what the family aregoing through, with what certainly the younger members of thefamily are going through as well.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200837

Some of the current young carers have expressed interest in working in thefield of caring. One young woman who has been caring for her youngersiblings has expressed an interest in working in childcare, because she haspractical experience in this area, or else training as a counsellor.’Cos I feel that I was so messed up that I could help people whoare messed up as well. And that would make me feel a lot betterin myself to see, to try and help other people in the samesituation. A few career choices out of it anyway!’Another young carer wants to work in the medical field and feels that herexperience in caring for her mother would be of benefit to her.‘Well I kind of want to do medicine when I’m older so I’ve kind ofgot a head start.’3.5.3 Social Life/ RelationshipsMost of the young carers and former young carers interviewed said thatbeing a young carer impacted on their social lives and relationships.Because of their caring responsibilities they had less time to spend withfriends, to develop relationships and to engage in social activities.Young carers who missed out on lots of school because of their caringresponsibilities also missed out on the opportunity to develop friendshipswith classmates.‘I had no school pals, ’cos the school pals I couldn’t have.’They also missed out on social aspects of school life, such as schooloutings.‘And it was so horrible then to find that even school outings,they’d be going away, that time they’d go up to the zoo inCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200838

Dublin, it was a great excursion, up to Dublin in the bus, it wasfantastic. I couldn’t go.’One former young carer has been providing care since she was nine yearsold. Now in her thirties she has never had a relationship and she feels thatthis is directly a result of being a carer.‘I’ve never had time to get into a relationship because youcouldn’t go out, you didn’t have babysitters and things like that.There was never any kind of a relationship. You couldn’t. Beinga carer is a very lonely experience.’Some of the young carers resented the fact that they had little time to ‘hangout’ with their friends and that while their friends were out playing and havingfun they had to stay home and help out.‘I don’t hang around with my friends as much.’‘Most of my friends they’d be out nearly all the time and I haveto stay in and help my mum. I’m not able to go out as much.’‘I went out for the first time in about a month Sunday and stayedovernight in a friend’s house. That was the first time in about amonth that I done that, went out for longer than a few hours.’Some of the young carers and former young carers felt unable to invitefriends to come to their homes because they were embarrassed about thesituation at home or because their family didn’t want anyone to know whatwas going on.‘There were no school pals to come to the house ’cos my fatherdidn’t want anyone.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200839

‘I usually go to my friends’ houses. I’m kind of embarrassedabout the situation at home.’‘I wouldn’t want my friends to come round here.’For some young carers it was the constant interruptions which causedfrustration. They would be in the middle of doing something, spending timewith friends, being out, watching TV, etc., and would be called away to helpout and provide care.The lack of free time for their own activities also caused difficulties for youngcarers.‘Like as a carer you were always clock watching, always, alwaysclock watching. You never ever had free time. You might get twohours, you know what I mean.’‘I don’t have enough time to practise my piano, violin and flute.’Any free time or social activities have to be planned and may have to becancelled at short notice if circumstances change.‘I have to arrange weeks beforehand if I want to go out for anight or anything like.’‘Like I could say to you I’ll meet you Friday night, eight o’clock,no bother. Seven o’clock I could ring you and have to cancel. Soyou lost a lot of friends because of things like that.’3.5.4 Health (Mental and Physical)Being a young carer can have a detrimental impact on the health (mentaland physical) of the young people involved.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200840

This can be most clearly seen in health problems that are directly related toor caused by the caring work. Examples of this include physical exhaustionand back problems.‘I don’t like doing it. It hurts my back sometimes. And I pull mymuscles a lot as well. My back, my arms and my legs.’‘I’m exhausted from it.’Other physical health problems can be linked to the stress associated withbeing a young carer.One woman developed allergies, with associated health problems, whichshe feels was because she was in such a stressful situation at home.‘My health was deteriorating; I had a lot of allergy problems, butthat time they didn’t know it was allergy problems. I was gettingsick a lot, then the doctors, and in and out of hospitals; theydidn’t know what was wrong with me. Stress, my system hadbroken down.’One young boy began to get really bad headaches, which had no apparentphysical cause. The doctor advised him to visit a counsellor who linked theheadaches to the stress the boy experienced in trying to combine his caringresponsibilities with a heavy school workload. Strategies to address thisstress have succeeded in relieving the headaches.For many young carers the greatest impact is on their emotional and mentalhealth. The majority of the young carers and former young carersinterviewed experienced stress because of their situation. For some this ledto depression and anxiety. Some former young carers have needed to go toa counsellor to deal with the impact of this stress on their emotional andmental health and some of the current young carers felt that they needed tosee a counsellor to help them deal with their current situation.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200841

‘Looking back I would say most certainly my older brother andmyself, I would say certainly our mental health suffered. And Iwould say that we became depressed for quite some time.’‘Emotionally you get very depressed when it gets like this, ’cosyou don’t know what to do or you feel like nobody’s there foryou to help or anything.’‘Not knowing what’s going to happen next. Constantly worryingabout everything. And not having a life basically.’3.5.5 PovertyMany of the young carers and former young carers interviewed had to dealwith financial hardship directly linked to their position as young carers.For some this was because they were living alone with a parent who wasunable to work because of illness or disability and the family wassubsequently dependent on social welfare payments.‘We were completely pauperised through all this as well.’‘Money was very, very tight.’In one situation the young carer was caring for an ill parent and, when thesituation worsened, the second parent had to give up work to help care forthe ill parent. This had subsequent implications for the family’s financialposition.Another young carer had to leave school and to go to work to support herfamily because her father died when she was sixteen.‘Yeah, there was no money. There was a widows and orphanspension, ‘twas £23.50. Going back then that wasn’t an awful lotCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200842

of money. I think we were a pound over the poverty line. Thatmeant you got no benefits.’‘There were days when we barely had food. There were dayswhen we had to burn shoes, we didn’t have coal.’In one particularly disturbing case, the current young carer and her siblingsare occasionally in a position where they would have no food or money.Their mother suffers from manic depression and when she is ‘high’ shetakes the family’s money and leaves nothing for the children.’Cos when my mother gets like this she takes any money thatwe get and basically spends it on cigarettes and nothing elsereally. So there’d be no food or anything.’‘I remember around two years ago she got sick and my littlesister was taken out of it, she went to stay with my aunt. Andthere was me and my brother in the house for about a week byourselves with no food or nothing. So that was horrible.’When asked what kind of supports would help to make her situation betterher answer was:‘Financial really, because she takes money, and coal and stufflike that. It’s just food basically and heating that is sometimesneeded.’However, the financial hardship and impoverishment is just one aspect ofthe poverty implications for young carers. It is clear from this study thatbeing a young carer leads to impoverishment of young people’s lives. Thiscan be seen in the impact on their educational opportunities, reduced lifechoices and impact on their future employment options and earningpotential. Being a young carer also leads to impoverishment in terms ofyoung people’s social lives, relationships and interaction with peers.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200843

3.6 Information, Professional Intervention and SupportsOne of the biggest problems identified by the young carers and formeryoung carers in this study is the lack of information and of professionalinterventions and supports for the young people.Many of the young carers and former young carers mentioned that theydidn’t understand what was going on when their parent became ill and thatnobody explained the situation to them. This was very confusing andfrightening, particularly when they were so young.‘Here at home we didn’t know what was wrong.’‘When I was a young carer, there was no information; there wasno access; like we never saw a social worker. I know it’schanged today but we never saw a social worker. We sawnobody. Not a public health nurse, nothing.’‘Looking back now, we would have gone, What the hell is this?We wouldn’t have understood it. I was 15; my brother wouldhave been 17. We didn’t know what it was. We weren’t reallyapproached by anybody. We weren’t really visited by acommunity psychiatric nurse or anything like that, not that I canremember at all. And then the contact with the hospital wouldhave been between the hospital and my father or my mother’sbrother; they would have been the people that the situation wasdiscussed with.’Former young carers expressed anger that, even though professionals suchas doctors, teachers or social workers would have been aware of theirsituation, nobody had intervened to assist the young people.‘What hurts me most is the fact that all that went on and therewas no one took any notice.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200844

‘I distinctly remember going up to the GP for her sick form. Andshe would be in terrible condition. And the GP would just handout the sick form and never visit us or discuss anything withus.’‘It was an absolute disgrace what was going on in the sense ofus not being approached, supports not being put in for us.’Discussions with current young carers show that there is still inadequateprofessional intervention and supports for young carers. For example, oneyoung carer who is caring for a young sibling because of her mother’smental illness has stated that she receives no professional support, receivesinadequate information and intervention from her mother’s doctor and hasnever been contacted by a social worker.However, one of the other current young carers spoke of the difference thatan engaged and supportive social worker had made to his family. Sheengages with the son as well as the mother and provides practical supportsfor the family.‘The social worker is brilliant like.’‘She comes around a lot and helps out with stuff to do with thehouse, like the chairs and carpets. She’d be up the whole time.She and my mam talking and having a cup of tea. You wouldn’tthink she was a social worker at all, you’d think she was one ofmy mam’s friends.’Both current and former young carers stressed the need for more adequateHome Help and Respite Care and expressed anger at the recent cutbacks inthese services.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200845

In addition to the lack of adequate professional supports, some formeryoung carers were angry at the lack of support and help from familymembers and at the fact that they were left with all the caringresponsibilities.‘I suppose when I came to sixteen, seventeen, eighteen, I feltvery angry. Extremely angry. ’Cos I’ve three brothers and I’veone older sister. The older sister was gone, she was in America,so she was gone. The three boys never ever took responsibility.’‘For years I was very angry that they weren’t doing their bit like.’However, for some of the current young carers, their situation is somewhatrelieved by assistance from family members, including the other parent,siblings, or aunts/uncles.3.7 Contact with Other Young CarersIsolation can be a major problem for young carers. Because of their caringresponsibilities they often have less time to spend with their friends andpeers. Young carers also felt that it could be difficult for friends tounderstand what it was like to be a young carer and some felt tooembarrassed to discuss their home circumstances with their friends.Few of the young carers knew of, or had contact with, other young carersand they often felt that they were the only one in that situation.Two of the young carers had participated in an event for young carers whichwas organised by the Cork MS Society. They found it beneficial to learn thatthere were other young carers and that they shared similar experiences.‘I actually didn’t realise that there were others. I thought thatthere’d only be a few others but there was a good few.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200846

‘It was good to talk to them. You wouldn’t know about it – you’dthink you were the only one.’Most of the current young carers expressed interest in meeting with otheryoung carers and in participating in a Young Carers’ Group if one wereestablished. The prime motivation was to combat their sense of isolation andto be able to talk with other young carers who would understand theirexperiences.‘Someone to talk with that they know what you’re dealing withand we know what they’re dealing with.’‘We could share problems and you wouldn’t feel so isolated.’‘Doing this you feel very alone. You feel that there’s nobody elsearound. So it would be nice to find out how other people dealwith it and stuff. I think that (a young carers’ group) would be avery good idea alright.’3.8 ConclusionIt is clear that being a young carer has significant implications for the livesand wellbeing of the young people involved. The areas affected includeeducation, employment, social life, relationships and health, and smoothtransitions to adulthood.Being a young carer can lead to impoverishment of young people’s lives, notonly in terms of financial hardship and lack of basic resources such as foodand heating, but also in terms of the impoverishment of their lives, affectingtheir education and employment opportunities, their social lives andinteractions and their health.The lack of adequate information, supports and professional interventionshas exacerbated already difficult situations for young carers. It is clear thatCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200847

adequate professional supports and interventions are essential in mediatingthe impact of caring on young people’s lives.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200848

4 Conclusions and RecommendationsConclusionsThis research was an exploratory study which set out to give a voice tohidden young carers who are largely unseen and unrecognised both withinthe enumerated care givers of the population and within the population ofthe country as a whole. This research can be seen as a first step inremedying that situation through giving them a voice to articulate theirattitudes and experiences, and the short-term and long-term impacts of theircaring responsibilities. A number of important conclusions emerge from theresearch.4.1 Implications for Lives and Wellbeing of Young CarersThe interviews revealed that caring responsibilities bring significantimplications for the lives and wellbeing of the young people involved. Theareas affected as identified in the interviews include education, employment,social life, relationships and health. These findings are largely consistentwith the international research discussed in Chapter two, though as alreadynoted US research suggests an absence of adverse emotional or mentalhealth impacts of young caring in adulthood.4.2 Risk of Poverty and Social ExclusionThis research has revealed that being a young carer can lead to theimpoverishment of young people’s lives, not only in terms of financialhardship and lack of basic resources such as food and heating, but also interms of reducing their life chances, by affecting their education andemployment opportunities, their social lives and interactions with their peersand their mental and physical health.4.3 Absence of Professional SupportsInterviewees highlighted the lack of adequate information, supports andprofessional interventions which exacerbate already difficult situations foryoung carers. It is clear that adequate professional supports andinterventions are essential in mediating the impact of caring on youngpeople’s lives (as discussed below).Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200849

4.4 Awareness of Health, Social Care and Education ProvidersService providers when informed of the research findings reported a lowlevel of knowledge or understanding of the experience of hidden youngcarers. A greater level of awareness of the needs of young carers on thepart of professionals such as social workers, youth workers, communitydevelopment workers, health professionals, home-school community liaisonofficers, etc., is essential to help in early identification and in devisingappropriate responses. Extension to the remit of particular services such asthe carers support office of the HSE (South), and, subject to adequateresources, the Carers Association, should be considered as a priority. Forother organisations working with families where young carers may exist,strategies for heightened awareness of their needs should be devised.The interruptions/ dilution of formal educational experiences caused bycaring responsibilities places hidden young carers at a considerabledisadvantage in terms of life chances, labour market participation oracquisition of formal qualifications. Nonetheless, this research has revealedthat despite the adversities they endure young carers build up significantskills and resources in taking on care responsibilities. In this regardconsideration should be given to policy initiatives aimed at giving recognitionto the experiences and skills of young carers such as VEC-certified traininginitiatives, the EU Leonardo programme, distance learning programmes, etc.Such initiatives would mirror proposals for recognition and accreditation ofthe adult caring role made in recent policy documents such as the NAPSocial Inclusion.Recommendations4.5 Policy ResponsesIt is evident from this the? literature and policy review that official awarenesslevels of the existence, contribution, needs and experiences of hidden youngcarers in Ireland is uneven. Policies and strategies (both statutory and nonstatutory)have to date not adequately acknowledged the existence of, orroles fulfilled by hidden young carers.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200850

As a first step in redressing this omission, future policy documents, includingmost immediately the proposed national carers strategy, should overtlyacknowledge the existence of, and contribution made by young carers andhighlight the necessity for policy and support measures to meet their needs.Having said that, policy responses to the negative impacts identified in theresearch must be carefully considered. Service providers consulted duringthis research, and echoing the international literature, pointed out thatspecial initiatives, while welcome, must be sensitive to the dangers (ofisolation, stigmatisation and tokenism) attendant on targeted interventions.The burden on young carers is bound up with the absence of, or lack ofaccess to services and supports for those cared for. Responding to theneeds of young carers should ideally focus on the needs of all familymembers within a wider community context. To this end considerationshould be given to the negotiation, with their consent and participation, of acare plan for all young carers. This should be devised on a consultativebasis by the relevant statutory agencies and should clearly stipulate theroles and responsibilities arising for them.4.6 Institutional FrameworkThe dissemination of the interview findings through the seminar and theaudit of service providers highlighted a high degree of commitment torespond to the needs of hidden young carers. In building on thiscommitment, as an initial measure, consideration should be given to theestablishment of consultative committees to promote awareness anddetermine appropriate policy responses in their area.4.7 Further Research at National LevelIn light of the issues raised by hidden young carers in this research furtherinvestigation of their experiences is warranted. Consideration should begiven to a larger-scale (possibly national-level) study aimed at enumeratingin quantitative terms the number of young carers and the extent of hiddencaring carried out by this difficult-to-access population. This would enablethe development of an appropriately scaled support infrastructure for youngcarers which could be used as the basis for national frameworks ofCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200851

ecognition, policy and support measures and interventions such asindividual care plans.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200852

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Appendix 1: Survey audit of relevant organisations whosebrief may include providing services to young persons whohave assumed caring responsibilitiesPurpose of the auditThe audit of service providers was undertaken to ascertain the degree ofawareness and extent of recognition in policy and service provision within arange of statutory and voluntary organisations. Organisations wererequested to respond to a series of questions by postal survey as listedbelow.Response rateA total of seven organisations responded to the survey, comprising threestatutory bodies and four voluntary/community bodies. The statutory bodieswere: The National Education Welfare Board (NEWB), the Health ServiceExecutive South (HSE formerly the Southern Health Board), and the CountyCork Vocational Educational Committee (VEC). The voluntary/communitybodies were: Multiple Sclerosis Ireland (MS Ireland), People With DisabilityIreland (PWDI), the Irish Society for the Prevention of Cruelty to Children(ISPCC) and the Carers Association of Ireland.Profile of audit respondents• National Education Welfare Board: A statutory body dealing with schoolattendance (NEWB)• Multiple Sclerosis Ireland: A voluntary association offering support topersons with M.S. and their families• People With Disability Ireland: A community-based organisation whichcampaigns for services and provision for people with a disability• Irish Society for the Prevention of Cruelty to Children: A voluntaryorganisation which provides family support and child welfare servicesCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200857

• The Health Service Executive (South): A statutory body responsible forthe provision of health and a range of personal and family supportservices• The County Cork Vocational Educational Committee: A statutory bodywhich provides educational services throughout Cork county• The Carers Association: A national voluntary organisation which lobbieson behalf of carers and provides support to persons with caringresponsibilities.Themes included in the audit1. Awareness of existence and circumstances of young carers2. Mention of young carers in the organisation’s policies and documents3. Existence of services specifically targeted at young carers4. Inclusion of young carers in any services currently provided for carers5. Plans to develop policies, initiatives or services for young carers6. Whether any current policies or initiatives be adapted to meet theneeds of young carers7. Initial response to young carer interview findings.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200858

Audit Questionaire1. Would it be accurate to say that there is currently little or no awarenesswithin the (name of organisations) of the existence and circumstances ofyoung carers in the Greater Cork Area?Yes No (please circle)If ‘No’ please give examples to support this answer.2. Would it be accurate to say that there is no mention of young carers inany current (name of organisation) policies or guidelines with which youare familiar? Yes No (please circle)If ‘No’ please give examples to support this answer.3. Does the (name of organisation) currently have any services which aretargeted specifically at young carers?Please give details and enclose any relevant documentation.4. Are young carers included in any services currently provided for carers?Please give details and enclose any relevant documentation.5. Does the (name of organisation) have any plans to develop policies,initiatives or services for young carers?Please give details and enclose any relevant documentation.6. Could any current (name of organisation) policies or initiatives beadapted to meet the needs of young carers?Please give details and enclose any relevant documentation.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200859

7. Please provide a (name of organisation) response to the issues raised inthe Report on Young Carers attached.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200860

Summary of Audit FindingsTable A1.1: Organisations were asked to indicate whether they had anawareness of existence and circumstance of young carersRespondent No yesNEWBXMS IrelandXPWDIXISPCCXCo. Cork VECXCarersXAssociationSouthern HealthBoard (HSE)XComments made by organisations surveyed in response to thequestion:MS Ireland: Notes that their 1996 report mentions young carers; theircasework service works with young carers, ‘which informs the organisationof young carers’.PWDI: ‘As a cross disability support organisation the Cork Network of PWDIis well aware of the inadequacies and levels of care.’ISPCC: ‘An ISPCC intervention with children and families is conducted inthe family home. It involves a period of assessment where such factors aretaken into consideration.’VEC: Refers to provision of certification and courses for carers by Co. CorkVECCarers Association: Provides respite to a young carer looking after hisfather; intend to run Schools Information programmes to raise awareness ofgeneral caring.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200861

Table A1.2: Organisations were asked whether there was any mentionof young carers in the organisation’s policies and documentsRespondent No yesNEWBXMS IrelandXPWDIX (see below)ISPCCX (but onlygenerallyCo. Cork VECX (but onlygenerally)CarersXAssociationSouthern HealthBoard (HSE)XComments made by organisations in response to the questionMS Ireland: The MS Ireland Strategic Plan p. 15 refers to specialconsideration needing to be given to ‘child carers’.PWDI: States that ‘improving the level of care of people with disabilities is afundamental objective of PWDI’ and gives example of last AGM.ISPCC: ‘While it’s not within a specific policy document, factors such aschildren’s rights are mentioned in all our policy documents.’Co. Cork VEC: ‘Included in adult education courses [childcare courses –Carers (Adult and Young) in Strategic Development Plan] and inprogrammes and mission statements.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200862

Table A1.3: Organisations were asked to indicate the existence ofservices specifically targeted at young carersRespondent Yes noNEWBXMS Ireland XPWDIX (‘nothingspecific’)ISPCCX (‘notspecifically’)Co. Cork VECX (notspecifically, seeTable 2)CarersAssociationX (but seedetails)Comments made by organisations in response to the questionMS Ireland: States that caseworkers are available to work with youngcarers; also that a counselling service is available. A young carers’ supportmeeting is planned with facilitator/counsellor input.ISPSS: Services not specifically offered, ‘but should a young carer approachthe ISPCC or be referred’ they would work with the young carer and theirfamily.Co. Cork VEC: ‘See above.’Carers Association: ‘Not specific to young carers but they get special focuswhen they are involved.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200863

Table A1.4: Organisations were to indicate whether young carers areincluded in any services currently provided for carersRespondent Yes noNEWBX (n/a)MS Ireland XPWDIX (unspecificresponse)ISPCCXCo. Cork VEC XCarersAssociationXComments made by organisations in response to the questionMS Ireland: See Table 3Co. Cork VEC: ‘Carers courses are open to all age groups.’Carers Association: ‘Respite is the main area where young carers getspecial attention when we receive information about them as carers; nodocumentation regarding respite.’Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200864

Table A1.5: Organisations were asked to indicate whether they hadplans to develop policies, initiatives or services for young carersRespondent Yes noNEWBXMS Ireland XPWDIX (only indirectly)ISPCCN/aCo. Cork VECX (only indirectly)CarersAssociationXComments made by organisations in response to the questionNEWB: Section 17.2 (g) of the Education Welfare Act 2000 states that theremay be ‘sufficient cause’ for a young person’s non-attendance at school.‘The NEWB will advance and assist in such cases.’MS: See Table 3.ISPCC: ‘All services are directed at 0–18 target group.’Co. Cork VEC: Ongoing – strategic plans.Carers Association: Formerly had certain initiatives, but it seems that therewas poor involvement by young carers.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200865

Table A1.6: Organisations were asked to indicate whether any currentpolicies or initiatives could be adapted to meet the needs of youngcarersRespondent Yes noMS Ireland X (indirectly)PWDIISPCCXCo. Cork VEC - -CarersXAssociationSouthern HealthBoard (HSE)XComments made by organisations in response to the questionMS Ireland: ‘Young carers being considered as part of ongoing service andfuture developments.’ISPCC: Mentoring programmes, CSW service, children’s consultation.Co. Cork VEC: ‘N/a, ongoing.’Southern Health Board (HSE) “The recently published Action Plan for theDevelopment of Physical and Sensory Disability Services: “Supporting anIndependent Future” makes reference to the need to co-ordinate services forcarers in the statutory and non-statutory sectors.”Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200866

Table A1.7: Organisations were asked to offer an initial response toyoung carer interview findingsRespondent Yes (responded) No (did notrespond)NEWBXMS Ireland XPWDIXISPCCXCo. Cork VECXCarersAssociationXComments made by organisations in response to the questionNEWB: Notes that the interview findings ‘highlights the lack of opencommunication between young carers and the school around homework andthe inability to concentrate because of the stressful home situation.’MS Ireland: Sees particular relevance to the organisation and developmentof their services in the areas of information, support and intervention.Carers Association: Would like to get more involved in young carerspecificprojects, but cite lack of resources, particularly personnel, asobstacles to doing so.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200867

Overall commentary on findings from auditThe responses from the different organisations illustrate the difficulty ofisolating young carer issues from other issues and interventions, e.g. inrelation to child welfare generally or to problems of adults with care needs,and of issues around these. One might suspect that young carers whoattend VEC courses or are offered respite are in fact at the upper end of theyoung carers age range. Organisations articulated differing views on thedesirability of whether to recognise young carers as a specific category ofthe caring population especially in regard to how this may create difficultieswith statutory obligations around child protection and welfare and schoolattendance. Many hidden young carers come from families which arealready vulnerable and for that reason wish to remain hidden and avoiddrawing official attention to their situations. There was a consensusamongst organisations surveyed that interventions from statutory and othersocial care agencies must therefore be very carefully nuanced and basedfirst and foremost on the principal of improving the welfare of the youngcarers and their families. Unless this is adhered to well intentionedinterventions may well be negative and counterproductive in their effectsand lead to further marginalisation of young carers and their families.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200868

Appendix 2: Seminar on Young CarersThe second stage of the research on young carers entailed the facilitation ofa day-long workshop aimed at individuals and organisations whose serviceshave a bearing on young people who fulfil caring responsibilities.Purpose of the seminarA core objective was to impart the findings of the young carer interviews tothe seminar. Additional aims of the workshop were:• To assess the levels of awareness of the existence of young carers andtheir specific needs among statutory, voluntary and communityorganisations working in the area of health, community development,education and social services• To determine the extent to which agencies made specific provision inresponse to the needs of young carers• To disseminate the findings of the interviews with young carers on theirexperiences and needs• To identify what strategies at a policy level and service delivery levelcould be adopted to better respond to the needs of young carers.On the basis of the main issues arising from the interviews with youngcarers the seminar was structured around a number of key themes: lifechances, community development, and education. Workshop participantswere assigned to a thematic area related to the nature of their organisationand the service it provided.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200869

Table A2.1 Profile of Seminar ParticipantsName ofOrganisationNature ofService OfferedNo. of StaffattendingSeminarSpecific Provisionof Services forYoung Carers1. HSE (South) Health and Social 11 NoServicesHSE (South) Support Co-ordination of 1 Nofor Carers Office services to carersin SHB region2. Multiple Sclerosis Services and 1 NoIrelandSupport of M.S.sufferers3. National Education School Attendance 1 NoWelfare BoardServices4. Department ofPromoting1 NoEducation and ScienceHome School LiaisonOfficercooperationbetween home,school/communityagencies5. Cork City Partnership Local and3 NoCommunityDevelopmentServices6. GurraneabraherProvision of 1 NoYouth CentreServices to YoungPeople7. Cork Rapid Programme Revitalisation ofdesignateddisadvantagedareas1 No8. Irish Society for thePrevention of Cruelty toChildren9. Department of Socialand Family Affairs10. Local EmploymentService11. Cork City DevelopmentBoardChildcare SupportServices1 NoProvision of social 1 Nowelfare services,payments andsupportCo-ordination of 1 NoLocal EmploymentServicesCommunities 1 Noinvolvement inprovision of publicservicesCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200870

12. The Carers Association Support andAdvocacy forCarers1 NoSeminar Feedback and RecommendationsAcknowledging the existence and role of young carersThere was a general consensus that the existence of young carers is largelyunacknowledged by service providers and their needs go unrecognisedwithin policy and support services for carers in general. Of the 12organisations/ service providers represented at the seminar none madespecific provision for young carers in their policy brief or service provision.(See Table 1 below.)Validation of findings and commitment to respondDespite the absence of a specific awareness of the existence of or needs ofyoung carers there was a high degree of validation of the experiences ofyoung carers as revealed by the interview findings. Service providerspreviously unaware of the extent and impact of young carers were highlydisposed to responding to their needs, once the experiences revealed by theresearch were highlighted.Source of non-recognition: Invisibility rather than exclusionOn the basis of the seminar presentation of the research findings and thefollow-up workshops it can by understood therefore that the lack ofrecognition of young carers and their needs has arisen out of their invisibilityrather than their active exclusion by service organisations and providers.Variety of contexts within which young carers operateA broad consensus among service providers was that hidden young carersexist in a wide variety of contexts. It was noted that the roles of young carerscan range from responsibilities that could be classed as a normal andproportionate contribution to their family/households and do not place themat a major disadvantage, to those that are excessive and disproportionateCombat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200871

and can result in young carers missing out on key areas such as education,contact with peers, etc.Responding according to young carers’ needs and circumstancesThere was a consensus among service providers and participants at theworkshop that while recognition of the needs of young carers was essential,such needs must be responded to in an appropriate way. Because of theircaring responsibilities many young carers feel the necessity to remainhidden, for example to explain absences from school using excuses otherthan their caring responsibilities, or not to participate in youth clubs andsports because they feel unable to make a commitment.Accordingly, responding to their needs should avoid further isolation ofyoung carers as a separate category treated differently to their peers.Instead, the onus should be on service providers to adapt and adjust theirinterventions and responses at a more general level so that hidden youngcarers are not by virtue of their circumstances prevented from availing ofservices or participating in activities with their peers. In essence, serviceproviders should work on the basis that there will always be a proportion ofyoung people who are carrying caring responsibilities and services shouldbe structured and delivered accordingly. ‘Dangers of targeting andcompartmentalising young carers as yet another “club” may lead to isolation’(Workshop participant).Recognition of young carers in overall carers servicesWorkshop participants also felt, however, that existing support services forcarers in general (as distinct from general service providers referred to in theprevious paragraph) should acknowledge young carers in more specificterms. For instance in the HSE South Region there is a Carers Co-ordinatorwho currently has no mandate for young persons who carry caring outcaring responsibilities.Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200872

Appendix 3: Interview Schedule for Young CarersYOUNG CARERS RESEARCHINTERVIEW QUESTIONS/ISSUES TO BE DISCUSSEDPreliminary: Explanation of project. Confidentiality. Feedback/ possibleoutcomes.Name:How old are you?Where do you live?Who do you live with?Tell me about your family.Do you get on well with them?Tell me what it’s like taking care of _______.What do you do?Is it every day/week (indication of extent of caring responsibilities)How do you feel about taking care of ______?What do you like about it?What do you hate about it?How does it affect you?Do you ever feel stressed because of your responsibilities at home?Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200873

What do you think you learn from taking care of _______?What things have you learnt to do?Do you think you could use these skills in other ways, maybe for a job?Where do you go to school?Do you ever miss out on school because of responsibilities at home?Is your school aware of your home situation?Do they offer any support?Tell me about your friends – who do you hang out with?What kinds of things do you do together?Do you go out often?How do your friends react to your caring responsibilities at home?Do you have any hobbies?Are you involved in any groups or do you play sport?Do you have much contact with other family members who are not livingwith you, e.g. grandparents, aunts etc.Do they ever help out?Who would you turn to for support if there was a problem at home?Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200874

Do you or your family have much contact with social workers, medicalprofessionals, etc?What kinds of help do they offer?What kinds of things would make life easier for you and for your family –supports, services?Do you know any other young people who take care of someone at home?Would you like to have more contact with other young carers?What are your plans for the future?What would you like to do?What would make this possible?What do you think of the term ‘young carer’?Would you call yourself a ‘carer’?Combat Poverty Agency ‘Hidden Voices: An Exploratory Study of Young Carers in CorkOctober 200875